Lymphovenous Canada: Highlights from the First Montreal International Lymphedema Congress

May 28-30, 2003 the Lymphedema Association of Quebec and McGill University held a conference on lymphedema. Through the determination and hard work of the dynamic duo: Dr. Anna Towers, director of Palliative Services at the McGill University Health Centre and Rachel Pritzker, President of the Lymphedema Association of Quebec (AQL/LAQ) and her dedicated volunteers, the Congress was a fabulous success.

Rachel Pritzker, president of the LAQ, and Dr. Anna Towers, Director of Palliative Care at McGill University, the dynamic duo behind the Montreal conference.

Over 300 people attended the session. The workshops were punctuated with discussion and debate throughout, which made it a most stimulating experience. Here's hoping we do it again - soon!

The First Montreal International Lymphedema Congress was the first conference of its kind in Canada. This trail blazing event focussed on clinical and evidence-based treatment of lymphedema. In addition to workshops for professionals working in the field, the conference also provided a special congruent two-day program for patients, their families and caregivers. The Lymphedema Association of Quebec (LAQ) and the Department of Oncology of McGill University spearheaded this initiative, which was lead by the dynamic duo: Rachel Pritzker, president of the LAQ, and Dr. Anna Towers, Director of Palliative Care at McGill University. Several medical specialists from McGill University presented at the conference; their medical expertise was greatly appreciated by congress participants. Without the volunteer effort of members of the LAQ, however, this event could not have been held.

A number of spirited discussions took place throughout the congress around concerns that evidence-based research into CDT and MLD could potentially lead to the de-funding of these treatments by both insurance and public health care providers. (Some provinces, such as B.C. and Alberta, have recently seen publicly funded clinical services provided to cancer patients with lymphedema reduced).

In 2001 the Canadian Medical Association released its Clinical Practice Guideline 11 on breast cancer-related lymphedema which called for further research on treatments for lymphedema. Since the release of the guidelines a number of research studies (Hamilton, Edmonton and Halifax) have been funded in this area. See: http://www.cmaj.ca/cgi/content/full/164/2/191 for more information on the Guidelines.

Professor Susan Harris, who participated on the committee which oversaw the guideline development (along with Dr. Maria Hugi), made a number of presentations to the Congress emphasizing the importance of client centred treatment and evidence-based research in this area. She was supported by a number of consumers and health care professionals who pointed out that evidence based research is critical to identifying more effective ways of providing treatments for persons affected by lymphedema.

Professor Harris spoke to her research on exercise interventions for breast cancer survivors with lymphedema (The Myth of Exercise-induced Lymphedema). She noted that while sleeves can be helpful in exercising, in some cases sleeves could cause more swelling. More research is needed in this area and on the effects of exercise and persons with primary lymphedema, she concluded.

Dr. Horst Weissleder, Professor of Radiology at the University of Freiburg, Germany, made a number of keynote addresses throughout the Congress drawing on his work over the past few years in this area. Dr. Weissleder expressed concern that the lymphedema treatment pioneered in Germany is being diminished by changes to the country's health care system, resulting in higher costs to the individual. Dr. Weissleder cautioned against bandaging babies since they are still growing and indicated that the effectiveness of liposuction was not convincing - especially given the absence of randomized studies of this practice. He suggested that the transplanting of lymphatic vessels only worked in situations involving secondary lymphedema - not primary lymphedema. He acknowledged the need for more evidence based research in these and other lymphatic forms treatments.

Dr. John MacDonald, head of the Department of Dermatology and Cutaneous Surgery at the University of Miami, Florida spoke on lymphedema, wound healing and compression and stressed the importance of compression in reducing infection and improving healing in wounds. He believes that compression reduces hospital stays by 50 per cent. His clinic is participating in a study at the University of Miami to confirm that compression is effective and safe for patients with lymphedema. Dr. MacDonald cautions that CDT is not a cost-effective form of treatment with an open wound and instead recommends the use of "smart" compression such as short stretch bandaging and the use of Una Boots to facilitate improved healing. He does not recommend the use of "long-stretch" bandages.

Lymphedema Association of Quebec volunteers stand in front of the registration booth for the Montreal conference - with their Dragon Boat oar in hand!

Dr. Andrea Cheville, Director of Cancer Rehabilitation at the University of Pennsylvania in Philadelphia spoke on lymphedema and gynaecological disorders. Dr. Cheville talked about how patients with gynaecological lymphedema felt a sense of shame with their disorder and experience a decline in sexual activity. Her clinic has performed intervaginal massage as part of their treatment regime.

Dr. Cheville talked about her clinic's use of pressure garments, designed similarly to maxi pads, to reduce swelling and address leakage of lymphatic fluid. She uses calcium alginate fluid dressings and activated charcoal for odour control. Dr. Cheville noted that fungal infections were less of a problem with gynaecological disorders than lymphedema in the feet and toes.

A number of workshops were held on consumer advocacy. Saskia Thiadens, Director of the National Lymphedema Network from Oakland, California held a session on advocacy and lymphedema. A workshop entitled: Consumer Beware: A workshop on self-advocacy involved a number of Canadian Lymphedema Foundation members:

• Dr. Maria Hugi, an emergency room physician at Providence Health Care in Vancouver B.C. and consumer with lymphedema;
• Cathy McPherson, administrator of the Canadian Lymphedema Foundation/Lymphovenous Canada web site and consumer with lymphedema; and
• Professor Jack Hay, Chair of the Scientific Advisory Committee.

Dr. Hugi spoke about her experiences with benzopyrones and her discovery that this drug was associated with liver damage; Cathy McPherson spoke about how to advocate to get better coverage from insurance companies; and Professor Hay explained evidence-based research, and how articles are peer-reviewed and published in health-related journals.

Obesity was discussed in a number of workshops. While research suggests a corollation between obesity and acquiring lymphedema in secondary lymphedema (such as breast cancer related lymphedema), the connection is not as clear with primary lymphedema. Many participants indicated an interest in receiving the quality of life scale in secondary upper limb lymphedema after breast cancer that was established by Robert Launoise at the Faculty of Medicine at the University of Paris, France. Of special interest to participants from the east coast of Canada: the Lymphedema Roadshow being initiated by Pamela Hodgson at the Community Health Department of the Memorial University of Newfoundland in St. John's. Over the next two years she and her colleagues will be traveling around Newfoundland holding workshops on lymphedema. All are welcome!